End of Life Care in Nursing Homes: Awareness, diagnosing dying and the conversation

Transcription

1 End of Life Care in Nursing Homes: Awareness, diagnosing dying and the conversation Martin Johnson (University of Salford) Moira Attree (University of Manchester) Ekhlas al Gamal (University of Jordan) Ian Jones (University of Salford)

2 Ian Jones (Salford University) Key Co-Workers Chris Taylor (lately) and Robin Gene, Marie Busuttil (currently of Salford PCT) Dr Stephanie Gomm, Steve Ingle, Bill Strettle (Salford Royal Hospitals Foundation Trust) Kim Wrigley (Greater Manchester and Cheshire Cancer Network) Ged Lythgoe and Paul Lewis, Salford Care Home Managers Service user/carer advisors Terry Powell Barbara Donnelly Catherine Lawson Supported by the Burdett Trust for Nursing, Salford Primary Care Trust

3 Glaser and Strauss (1960s) Awareness contexts Closed awareness Suspicion awareness Mutual pretence Open awareness

4 Importance of Glaser and Strauss Made field research into dying and other taboo issues respectable Encouraged a whole generation of nurses and other health professionals to study their own context Challenged beliefs and taboos Developed influential method of analysing data (grounded theory)

5 Jo Hockley Action research in 3 Scottish care homes Focused on end of life care This sector is expanding greatly and many more people can expect to die here than in the past Increasing number of older people dying in care/nursing homes - 20% UK population Found over-treatment to be common (not allowing people to die) Assumes resuscitation equipment irrelevant in this setting

6 Our study We all might benefit from better End of Life Care Evaluate, report, describe, understand, attempts to improve End of Life Care in Salford Care/Nursing Homes

7 Gold Standards Framework Plan to improve resident (and/or relative) input into End of Life Decisions Specifically stopping unhelpful treatment Reducing unnecessary hospital admissions Allowing people to die in their preferred place of care PCT and Acute Trust working hard to implement this in several stages across more than 30 homes

8 Gold Standards Framework (GSF) Advance Care Planning Preferred Priorities for Care Rapid Discharge Pathway (RDP) Liverpool Care Pathway for the Dying (LCP) Advancing disease Increasing decline Last Days of Life First Days after Death Bereavement 1 year 6 months Death 1 year The North West End of Life Care Model

9 Research Ethics University Approval Given National Research Ethics Service service evaluation and not in our sector

10 Research Plan Participant observation and interviews at two care homes (with nursing) Acton Court and Birchwood Participant observation of GSF training sessions for managers and staff

11 Care Home sample A B C Small private owner Manager 24 beds Nursing & Residential (Personal ) Large private company Manager 67 beds x 2 units 37 EMI/ Dementia & 30 Nursing/ Residential Small private owner (3) Manager 60 beds 30 Nursing & 30 Residential (Personal) Quality Regulator rating: * * * GSFCH Phase Qualitative Data: Interview: Manager = 1 RN & HCA = 8 Residents = 2 Observation * * * GSFCH Phase Quantitative Data n=36 Pre = 23 Post = 9/ 9 Observation Manager = 1 RN & HCA = 18 Residents = 5 Relatives = 12 (5) * * * GSFCH Phase * -> on hold; off programme Observation Pre = 13 Post = 0 Manager = 1

12 Adopting the Gold Standards Framework I actually got all the research of the Liverpool Pathway myself so I knew about it. And I ve said I d love to actually do it here. And then the PCT s End of Life Care Facilitator rang and I nearly bit his hand off. Yes, yes, yes! And obviously we had to pay a fee to do it, you know because of the training and everything and that was it really. (Helen, Mananger, Acton Court)

13 Diagnosing dying Gold Standards Grading A) Years to live B) Months to live C) Weeks to live D) Days to live

14 Diagnosing dying Liverpool Care Pathway Criteria The patient is bedbound Only able to take sips of fluids Semi-comatose No longer able to take tablets

15 Diagnosing Dying One lady that died was a lung cancer and I wanted to do...i wanted the drugs and he (GP) came out to see her but she didn t meet any of the criteria. You know, she was talking, she was sat up but you know on intuition: you just know don t you? And after being a nurse for some time you do get to know and I went, No, I really want pathway drugs for this lady. (Helen, Manager, Acton Court)

16 Diagnosing Dying I was told she would die today, you see, because I can see, I have loads of experience, loads of discolouration starting from the feet, going up, because of no more oxygen, oxygen saturation, it was that night, I always check her every hour, thirty minutes, just going up, I noticed there was discolouration, oxygen already from lower extremities, and when it was 8.00 o clock in the morning, already up to here, up to the thighs, I told the next nurse she will go, she will go today, hopefully, and o clock she died. (Dalisay, RN, 40)

17 Starting the conversation

18 Awareness Yeah, with the Dementia patients, with that side of things I don t think she knew what was going on from one minute to the next most days. She (Ursula) would have her good days which you could sit and talk to her. We were very honest with her. But being honest with you, there was only so much she would understand and she would forget it twenty minutes later and she d be asking us this every day. It was a bit frustrating, not on our part but must be frustrating for her; asking the same question and being told the same thing all the time. (Karen, HCA)

19 Awareness Staff Nurse Karen, about Sam who was dying of heart failure: Yeah. He was very with it. Didn t have any dementia or anything like that so he knew what was going on and you could tell sometimes because he did feel quite depressed. He knew he was here and that was going to happen to him eventually and that would get him down. There would be days where he wouldn t eat, lost interest to eat and we d just have to sit and persuade him. Tell him he s got his family round him. That s something to look forward to because he did used to cheer up when his family came to see him.

20 Deciding to die I mean one lady we had here, to me, was a prime example. She d been with us quite a while, sitting in the end chair, her name was Olive and this particular day, she just said to me I really don t feel well, I really don t feel well. I said it doesn t matter Olive, come on, I ll take you to bed. So we put here into bed, gave her a drink, came in the next morning, and she loved Weetabix that s what she had for breakfast. So I ve gone to give her the Weetabix, and she had a couple of spoonfuls, and then she just looked at me and said No, No more. And that was her. Didn t eat or drink, for a couple of days, and that was it. (Denise, HCA, 29)

21 Asking for death And like with Sam he d become quite old and he used to say that It s in that file, that black file that you can put me down. Sam we re not putting you down! But he knew and he was reassured and Sam always used to say to me Please don t let me have any pain because he d had these massive heart attacks. And he went promise me you won t let me die in pain, I said Sam everything s ready for you, you won t die in pain. (Helen, Manager, Acton Court)

22 Questions